Long Term Sickness Absence due to
ME/CFS in UK Schools:
An Epidemiological Study With Medical
and Educational Implications
Elizabeth G Dowsett
Consultant Microbiologist
Jane Colby
Former Headteacher
Executive Director, Tymes Trust
Abstract
Commentary by Dr Elizabeth Dowsett on the research paper published in
the Journal of Chronic Fatigue Syndrome in 1997, with an introduction by
co-author Jane Colby.
The abstract and introduction of the original paper. The study is the largest
epidemiological study of ME available to date.
The Young ME Sufferers Trust
Registered Charity 1080985
Founder Patron : Lord Clement-Jones CBE
www.tymestrust.org
Telephone and Fax : 0845 003 9002
PO Box 4347, Stock, Ingatestone CM4 9TE
The Young ME Sufferers Trust
Does ME Cluster in Schools?
Dr Elizabeth Dowsett
MB, ChB, Dip. Bact.
Honorary Consultant Microbiologist South Essex Health Trust
Introduction by Jane Colby
Former headteacher
Executive Director of Tymes Trust
Member of the National Association of Educational Inspectors, Advisers and Consultants
Introduction
In the United States of America, where ME has now
been listed as a Priority One disease, it is well accepted
that ME clusters in schools, families and communities.
But here in the UK that is not yet so. Yet this fact has
been common knowledge amongst parents and teachers
for some time, though perhaps not so obvious to doctors
because they do not work in educational institutions.
away. If anyone doubts this assertion, let them try, as
many journalists have, to persuade the head of a school
to admit - on air - to a cluster of ME and see what response you get. I for one cannot blame them.
When our study was published we explained that this
difficulty must indeed have reduced the numbers of returned questionnaires. Logically, however, if it did skew
the balance of our statistics in any way, it should have
inflated the ‘negative’ reports we got; no school minds
submitting a blank return showing no cases of ME at all!
And indeed, these came in plentifully.
When, back in 1990, Dr Dowsett explained to me that
‘the problem is, we have no statistics showing the pattern of ME in schools’, I said ‘So let’s get them.’ If I
had realised then that it would take us five years, during
which I was myself still ill with ME from a virus related
to polio, I might not have considered it so readily. The
exercise was hard, frustrating at times and involved accepting that due to political pressures on the education
system (and the near chaos of its re-organisation into
new types of institutions) schools were now overtly in
competition with one another. Funds depended on pupil
numbers, numbers depended on reputation and public
image. They still do.
In fact, we had taken some careful steps in the design
of the study, in order to check the reliability of our
results. One was to graph out other statistics which came
in. Our statistical graph for leukaemia correlated with
already known statistics for this disease, indicating that
our results were taken from a representative sample. In
addition, we checked that we had received a balanced
response from schools in both secondary and primary
sectors.
This meant that there was extreme reluctance to reveal
statistics to us in some quarters. ME had a controversial
image back then, more even than now, and in addition
there was a perception that if schools admitted to clusters
of cases, there would be a scare that children with ME
could transmit it to others. This would drive parents
The cases of illness on which our study was based were
diagnosed cases of ME. No schools were involved
in diagnosis, and were asked to list suspected cases
separately. We were of course never allowed to see any
documents, doctors’ reports etc. on any child or member
Long Term Sickness Absence due to ME/CFS in UK Schools
The Young ME Sufferers Trust
of staff, as these are confidential. However, it is part of
each school’s responsibilities under the 1991 attendance
regulations to place any absence from school in one of
two categories - authorised or unauthorised. In categorising absences the Head must be satisfied that the explanation is genuine, and will request documentation as proof.
We naturally accept the professional competence of
senior educational staff to carry out this duty.
In the following paper, Dr Dowsett pays tribute to the
education authorities who so kindly assisted us in the
face of controversy. It may be that some of the areas
which declined to help did so because they already knew
they had large numbers of cases. Whether this was the
case or not we shall never know, but our study had to
take place in those areas we chose for their geographical
location and which were also willing to reveal their ME
statistics. I should here like to add my thanks to those of
Dr Dowsett. Needless to say, we assured them of complete anonymity so that their areas would not be publicly
identified with the statistics uncovered; without such
assurances we would never have got the study off the
ground, like others who have attempted to study schools
and failed.
The discoveries we made are many and various, and
Dr Dowsett covers most of them below. There are two
others, however, which I find particularly interesting
- though perhaps not surprising.
One is that where Local Education Authorities are
ungenerous in their provision of special arrangements
for the education of children with ME, parents are more
likely to vote with their feet and take them off the school
roll entirely. This is sad because it means they are ineligible for all the help which the state should be giving.
This in turn means there is a danger of a two-tier education system for children with ME, one for those whose
parents can pay for suitable education, another for those
who can’t.
The other discovery, rather ironic in its way, is that
although ME has often been regarded as, at least in part,
a psychological or psychiatric condition, the LEAs we
studied provided more home tuition for psychiatric illnesses than for ME. A case of heads you win, tails I lose.
This is not entirely the fault of the LEAs, who have
often been following the advice of the 1996 report of
the Royal Colleges of Medicine (produced, they now
explain, mainly by The Royal College of Psychiatrists).
This report is not recommended by the Dept. of Health
as a treatment protocol. The Chief Medical Officer’s
Working Group on CFS/ME (instigated by Sir Kenneth
Calman in summer 1998) made recommendations in
Chapter 5 of its report (Dept of Health 2002).
ME/CFS in the UK
School Population
1 The Problem
Do children and adolescents suffer from ME/CFS?
Simple common sense tells most parents, teachers and
doctors that they do and often more severely than adults.
Yet there remains a sizeable proportion of professionals in Health Care, Education and Social Services who
are still prepared to ascribe the numerous, disabling
but seemingly unconnected symptoms of this illness in
young people to anorexia, depression, school phobia
or a dysfunctional family background. All are, at least,
agreed that the illness presents a considerable economic,
educational and social problem.
2 Market Research
No hopeful salesman can, nowadays, expect to succeed
without prior market research and no-one intending to
raise a bank loan for such a purpose will be considered
without a well-researched business plan. Unfortunately,
when we turn our attention to human disease, conclusions are often reached without prior study of the WHO,
WHAT, WHERE and WHEN which can lead to effective
consideration of WHY. In medical terms, this is called
EPIDEMIOLOGY, which means the study of human
diseases in relation to their environment rather than, for
example, the behaviour of small animals or tissue cultures in laboratory setting.
3 Historical Background [1]
Over 60 years ago, epidemiological studies of ME/CFS
were commonplace and usually initiated by doctors who,
lacking modern technology, simply used their eyes and
ears. Of over 70 recorded epidemics of ME/CFS since
that time, 13 clearly mention young people while one
is entirely devoted to that age group. These old surveys
were small and without government funding but they
clearly delineated present day findings such as female
predominance of cases, peak incidence at puberty,
variable prevalence linked closely to seasonal and geographical features (summer/autumn onset, cool/temperate climates and rural or suburban settings) as well as the
key role of schools and similar institutions in the spread
of the illness, with clustering of cases within families
and schools. The serious disabling potential and chronicity of ME/CFS leading to relapse is always noted.
4 Why did we embark on our schools survey?
To our knowledge, no government anywhere in the
world has yet funded an epidemiological survey of this
type and scale in schools. Ten years ago, a group of suf-
An Epidemiological Study With Medical and Educational Implications
The Young ME Sufferers Trust
6 What methods were used?
ferers from ME/CFS who were also teaching professionals, parents or carers of young people similarly affected,
conducted a postal survey of sufferers under the age of
25 years which stimulated a response from nearly 600
young people in the UK and abroad. The results were
disheartening in what they revealed, but they supplied
the initial impetus to seek further information about the
WHO, WHAT, WHERE and WHEN with an unexpected
bonus in relation to WHY?
What did this survey disclose? There were 3 major findings:
a) Only 29% of respondents under the age of 25 were
in full time education, training or work, while 34%
were totally excluded from all three. The remaining 37% were making various compromises, few
of which could be considered satisfactory.
b) An enormous loss of independence and self-esteem
was reported, with additional grief at the general
disbelief expressed not only by the press and by
various professionals but at the loss of support
even from friends, colleagues, family members
and those in a previously loving relationship.
c) The bonus was a personal invitation to study, at
close hand, the consequences (after 2 years) of
a seemingly trivial respiratory/gastro-intestinal
infection causing symptoms in 1/3 of a village
school roll, leaving some 10% of children so affected, with chronic relapsing energy problems,
musculo-skeletal pain and disabling prolonged
cognitive disturbance. Early laboratory investigation was missed but relapses in the following year
were significantly associated with the viruses then
circulating in the school (Influenza A and parvovirus infection).
5 How did we set up the 1991-1995 Survey? [2]
With a clear indication from the young people themselves of what to look for, we set out to find if such
a cluster of ME/CFS cases in a single school was a
unique event or if (as we already suspected) it would
be duplicated elsewhere. We hoped that, if successful,
the study might provide clear indication of a cause as
well as some helpful pointers to diagnosis, management,
treatment and prevention. Since we were not sanguine
about the funding of our ‘business plan’ by medical or
charitable agencies, we were grateful for the prompt and
unreserved backing of the educational profession, to
whose understanding of the importance of this subject,
all students and young sufferers from this illness must
pay tribute.
A search was made in six English Local Authority
(LEA) areas, chosen initially for their widely varied
geographical, economic and social mix, for all causes of
medically certified long term sickness absence in pupils
and staff. Confidentiality was assured in the collection of these details which were handled only by senior
educational staff and specifically excluded all personal
identification. The information requested included geographical location, age, gender and school class location
of sufferers, size of pupil and staff roll and education
or management provision while sick, as well as the outcome.
7 What were the most important findings?
Between 1991 and 1995 we were able to collect details
of all types of long term medically certified sickness
absence from schools with this problem as well as useful
information from those without it, and from 63 private
schools outside the LEA jurisdiction. Excluding (for cost
reasons) the private sector, whose details did not differ
significantly from the public one, our survey comprised
1098 schools, 333,024 pupils and 27,327 staff - the largest epidemiological survey of this type made to date.
Significant findings included:
a) Prevalence of ME/CFS in Schools
Over one third of the schools providing information reported long term sickness absence and of these, 2/3 had
cases of ME/CFS (230 pupils and 142 staff) suggesting
a prevalence in this population of 70/100,000 in pupils
and 500/100,000 in staff - a rate two or three times that
quoted in other adult population surveys.
b) Types of Illness Which Cause Long Term Sickness
Absence
Among the 885 individual sickness records received in 6
LEAs, ME/CFS was by far the commonest cause (42%
overall, 33% in staff and 51% in pupils) followed by:
cancer and leukaemia (23%); general medical or surgical
conditions (13%); musculo-skeletal problems (12%);
psychiatric disturbance and virus infections (5% each).
c) Clustering of Cases
Using a definition of 3 or more cases with the same
diagnosis in the same school, we looked at all illness
falling within this category and found 54 clusters (36 due
to ME/CFS, 7 to virus infections, 4 to psychiatric disturbance, 3 each to cancer/leukaemia and musculo-skeletal
conditions and one to diabetes).
45 clusters, including all but one of virus infection, occurred in schools with ME/CFS, the exception being one
Long Term Sickness Absence due to ME/CFS in UK Schools
The Young ME Sufferers Trust
in close geographical proximity. 4 small clusters (less
than 6 cases) of cancer, musculo-skeletal conditions
and psychiatric disturbance were noted in schools with
no evidence of ME/CFS. This was a noticeable difference from the large clusters of viral infection (variously
described as respiratory/gastro-intestinal, ‘flu’ or ‘glandular fever’ numbering up to 16 cases each) associated
with ME/CFS. Of the 372 ME/CFS cases in pupils and
staff, 149 cases (40%) were distributed as single cases,
78 (21%) as pairs and 145 (39%) as clusters of 3-9 cases,
a remarkably high prevalence of coincident ME/CFS and
viral infection in selected geographical areas.
d) Geographical Prevalence of ME/CFS
Though single instances were noted in all LEA areas
but one, we were surprised to find that the majority of
ME/CFS case clusters were associated with virus infection grouped in an LEA district which was by no means
the largest, but which was characterised by its suburban
growth after much recent population influx from the
building and expansion of ‘New Towns’ in green-field
sites.
It has always been a characteristic feature of certain
epidemic infections (eg poliomyelitis) and of illnesses
now suspected to be triggered by environmental factors including infection (eg childhood leukaemia) that,
when isolated rural or suburban communities with an
established and naturally acquired ‘herd immunity’ are
subjected to an influx of new population, the prevalence
of such illnesses increases.
e) The Effect of Age and Gender on the Prevalence
of ME/CFS in Schools
Of the 230 pupils certified as suffering from this illness,
157 were female and 73 were male, a F/M ratio of 2:1.
The average age was 13 with peak prevalence at 15
years. Sex ratios below puberty were more even, indicating a hormonal influence upon the known frequency and
chronicity of the illness in females during child-bearing
years. The majority of these sufferers were located in
senior schools.
Of the 142 staff with ME/CFS, 111 were female and 31
male, a F/M ratio of 4:1, influenced by the fact that most
staff employed in schools are female. This is especially
noted in the primary sectors where female staff are
more common and there is close personal contact with
children suffering from various infections and where the
majority of staff suffering from ME/CFS are located.
f) Education and Work Modification for ME/CFS
Although varying education and work management
patterns were used in sequence or in combination in all
LEAs surveyed, we consider the following to be key
factors in reducing physical over-exertion and mental
stress which, together with secondary infection, are the
commonest causes of relapse in subjects with ME/CFS
in the school environment:
Pupils
Home Tuition for those too ill to attend school
(but not generally suitable for the very sick, who
make a better recovery if education is postponed
until stabilisation of the illness).
Modified Timetable which permits, for example,
continued participation in selected school activities
(excluding sport) and the taking of examinations
sequentially over longer periods.
School Withdrawal which, in the absence of such
concessions, may oblige education ‘otherwise’
at home. There is, however, no evidence that
young people educated this way fare worse than
in conventional school classes, while many sufferers achieve better results in the absence of school
stress and repeated exposure to infection.
In our survey, provision over the 6 LEAs for
Home Tuition averaged 48% (range of averages
14-79%), Modified Timetables 57% (range of averages 50-86%) and School Withdrawal 6% (range
of averages 0-17%). Though some other medical
conditions enjoyed more generous provision, the
majority of pupils with ME/CFS were not removed
from the school roll. (NB Listing on a school roll
does not necessarily imply attendance.)
Staff
The average provision for Official Part-time work
was 50% (range of averages 38-80%) but Early
Retirement was taken up by 38% on average
(range of averages 27-100%) representing a serious and probably avoidable loss of career potential
compared with other illnesses.
Commentary
1 Of all the symptoms associated with ME/CFS, disturbance of cognitive function is the most disabling
and long lasting in both pupils and staff [3]. It induces
prolonged difficulties in maintaining wakefulness and
attention, in concentration and memory, in language
and mathematical ability and in appreciation of shape
and judgement of distance which, combined with motor
dysfunction affecting balance and fine motor control interferes with practical tasks and independence. Funding
for educational research [4] into the correct management
and educational needs of those affected (such as that
An Epidemiological Study With Medical and Educational Implications
The Young ME Sufferers Trust
already received by individuals with other movement,
speech or cognitive disorders) would be well repaid by
preventing the loss of educational potential in pupils at
an age when brain development is at its peak.
[5] ROYAL COLLEGE OF PHYSICIANS. Chronic Fatigue Syndrome - Children and CFS. 1996; CR54 : 29-33
2 Our survey into the clustering of ME/CFS cases in
schools and the wide variations in geographical prevalence disclosed suggests that it would not be difficult to
identify specific infections which can trigger the onset or
relapse of ME/CFS. Epidemiological research directed to
the school population, where good records are kept and
prolonged follow-up of physical and cognitive problems
is possible, would undoubtedly be as economical in
terms of diagnosis, management and prevention as it was
of the understanding of the true prevalence and mode of
transmission of poliomyelitis in the past.
[6] ARZOMAND ML. Chronic Fatigue Syndrome
among School Children and Their Special Needs - Journal of Chronic Fatigue Syndrome, Howarth Press Inc.
New York. London 1998 ; 4(3) : 59-69
3 The 1996 issue of CR54 [5] and the guidelines relating to management of young people with ME/CFS
(eg discouragement of Home Tuition, encouragement of
early return to school, intervention with anti-depressant
therapy and graded exercise) may well leave us with a
generation of young people suffering from educational
deficit and an inability to assist themselves back into
work, to meet government targets.
Note: Since the publication of our study, a community
paediatrician unaware of our work and unknown to us
at the time has, in subsequent years, completed a similar
epidemiological survey in just two boroughs of one LEA
mentioned in our study, with similar results. This work
was published in 1998 [6].
References
[1] Bell DS Children with Myalgic encephalomyelitis/Chronic Fatigue Syndrome: overview and review of
the literature. In: HYDE BM, GOLDSTEIN J, LEVINE
P eds. The Clinical and Scientific basis of Myalgic-encephalomyelitis/Chronic Fatigue Syndrome, Nightingale
Research Foundation, Ottowa, Ontario, Canada. 1992:
209-216.
[2] DOWSETT EG, COLBY J. Long term sickness absence due to ME/CFS in UK schools Journal of Chronic
Fatigue Syndrome. 1997; 3(2): 29-42
[3] Bastien S. Patterns of neuropsychological abnormalities and cognitive impairment in adults and children.
In HYDE BM, GOLDSTEIN J, LEVINE P eds. The
Clinical and Scientific basis of Myalgic-encephalomyelitis/Chronic Fatigue Syndrome, Nightingale Research
Foundation, Ottowa, Ontario, Canada. 1992: 209-216.
[4] COLBY J. The School Child with ME: British
Journal of Special Education. National Association of
Special Educational Needs. 1994; 21: 9-11
Long Term Sickness Absence due to ME/CFS in UK Schools
The Young ME Sufferers Trust
Long Term Sickness Absence due to ME/CFS in UK Schools
An Epidemiological Study With Medical and Educational Implications
ELIZABETH G. DOWSETT, MB. Ch.B; Dip.Bact.
JANE COLBY, LAMSC; CERT. Ed.
Elizabeth G. Dowsett is Honorary Consultant Microbiologist to the South Essex Health Trust and to the ME/CFS
clinic at St. Andrews Hospital, Stock Road, Billericay, Essex, CM12 0BH, United Kingdom.
Jane Colby is former School Principal, Member of the National Association of Head Teachers, Member of the UK
National ME Task Force Focus Group on Children, Consultant for the Education of Children with ME.
ABSTRACT
A study was made to determine whether the recognition of multiple cases of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in one school is an unique experience. A five year retrospective period prevalence survey (1991-1995) was collated from sequential reports made in six English
Local Education Authority (LEA) areas. By means of a confidential questionnaire circulated to 2942
school principals via internal mail, 1098 schools, comprising 27,327 staff and 333,024 pupils, were investigated. Details were obtained on age, gender, location in school sector, work pattern and morbidity.
Forty-two percent of all medically certified long term sickness absence was ascribed to ME/CFS, this
figure being well in excess of all other causes. This diagnosis was significantly associated with case
clustering, variable geographical prevalence, a marked increase in the female:male case ratio at puberty
and prolonged disturbance of educational potential. We conclude that ME/CFS in schools leads to serious economic and career problems. Redirection of research to special educational needs and to early
diagnosis of infectious agents which can trigger ME/CFS in schools might prevent, at low cost, much
chronic illness and education deficit.
KEY WORDS
CHRONIC FATIGUE SYNDROME, MYALGIC ENCEPHALOMYELITIS, VIRUS INFECTION,
SCHOOLS, SICKNESS ABSENCE, EDUCATION DEFICIT.
INTRODUCTION
The current study was prompted by personal experience of an outbreak of ‘Summer Flu’ with gastroenteritis in a village school. Seventy out of 230 9-11 year old children on the school roll were symptomatic. Following reassembly in the autumn, some 10% of those affected complained of profound
fatigue and cognitive disturbance which had not resolved on follow-up two years later. Apart from
one child, who had an encephalitic illness and was shown to have had a recent enterovirus infection in
July, laboratory investigations were delayed and unhelpful. Relapse of the illness in these same pupils
during the following year was demonstrably associated with superimposed infections due to Influenza
A and parvovirus then circulating. Only a much larger epidemiological survey in a different setting
seemed capable of answering the serious questions then posed.
Excerpt from the Discussion
We conclude that research funding would be highly cost effective if directed specifically to the educational needs of pupils with ME/CFS and to the early investigation of infective agents associated with
such a serious illness in schools.
If quoting from the above or from the full research paper, please quote the following reference
Dowsett EG, Colby J. Long-term sickness absence due to ME/CFS in UK schools;
an epidemiological study with medical and educational implications.
J Chronic Fatigue Syndrome 1997; 3: 29-42
An Epidemiological Study With Medical and Educational Implications